MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Replies by: Beccy2907

My mother is currently going through one of the toughest situations of her life. As her daughter, I truly don't know how to vent or show how scared I am about her diagnosis today. Today after 4 weeks of visiting specialists and getting referred from hospital to hospital, it has come to the conclusion she has Choroidal Melanoma. It all started about a month ago when she started to complain of flashes of light, black spots and floating objects from her right eye. She said she had immense pressure on her right side of her head and her headaches and migraines were getting worse. Ever since I was a child, my mom has suffered from migraines, but doctors never said anything about them. When she went into her primary 4 weeks ago about her vision and headaches, her primary measured her intraocular pressure and said it was high. He referred her to a basic ophthalmologist , (which took her insurance 2 weeks to approve) and he was the one who determined there was retinal detachment and a "mass" pushing on the retina. Once again she was referred, to another specialist, now this doctor I completely have the highest respect for, he was thorough, he has been wonderful and supportive, he was the one who did the B-scan, ultrasound, determining the tumor was inside the eye, thus ocular tumor, when I saw the ultrasound, my heart started to race, the tumor not only takes over half of her eye, but about 3/4 of her eye. As I write this I find myself tearing up, I am truly scared, I just found out about this today. I dont live with my mom, and my moms English is very limited, I feel like she is just so unaware of what is truly going on, and I dont want to show how much anxiety and how scared I truly I am for her. This doctor does not specialize in intraocular tumors, so we have now been referred to another specialist, but now we must wait until insurance approves, and it is a waiting game. They still need to do an MRI and blood work they said to see if she doesnt have tumors in other places or if it has spread. I am really scared, my mom is my best friend and this is just not easy for me to take in.

Elizabeth G.

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Janner's picture
Replies 11
Last reply 4/19/2014 - 10:54am

I don't often talk about my father here, but melanoma has claimed another warrior today.  At age 89, he was luckier than most that melanoma entered his life in his early 80's.  He fought cancer his own way.  The one advantage to being old is that all cells grow slower - even melanoma.  RIP Dad!

http://www.MelanomaResources.info

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Leslie'sHusband's picture
Replies 2
Last reply 4/18/2014 - 11:12pm

Les' surgery went well on Tuesday.  She had the clinical trial minimally invasive (laproscopic) complete lymph node dissection of her left groin.  Only three 1 inch long incisions in her thigh, one of which has the drain in it now.  There are definitely some divots in her thigh/groin area showing where they removed tissue below the skin.  Other than some nausea/vomiting from the anesthesia she had done very well.  We made the drive home from Duke on Wednesday afternoon, and she's getting around very well.  Now we begin another wait on the patology report on the removed lymph nodes.  We're due back at Duke with Dr.Tyler on the 28th to discuss the pathology, and possibly treatments.  I'm hoping that these removed nodes are clear.

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My sister was informed today that she has a Negative BRAF gene mutation KRAS.  SHe's not eligible for many clinical trials because her mutation is rare.  Would like to know if any others share this same type of mutation and if so what treatment option they tried.  

 

We are thinking of doing the IL2 first, then move to Yervoy, and hope that later on in the summer she will be eligible for a antipd1.  

 

Can anyone give any advice on their cancer or a loved ones?

 

We need just a glimmer of hope..

 

PS her husband also has Melanoma stage 4 and so you can imagine how heartbreaking all this is with having 2 small children.

 

BTW she is 46, no other health issues, good shape, liver nodule is 3cm and the lungs are even detectable.

 

 

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Shelby - MRF's picture
Replies 1
Last reply 4/18/2014 - 4:43pm
Replies by: Tina D

Dear MPIP Community,

We were recently contacted by Integrated Research and Data, a research company based out of Ft. Lauderdale, FL. They are currently searching for melanoma patients, diagnosed at different stages, to participate in an online survey. The goal of their research is to understand different aspects of patient needs and treatment plans. 

The first step would be a screening done by phone. Follow-ups would then be done to get the right amount of different types of patients. If you are selected to participate in the study, you will be given a $150 Visa prepaid debit card. The survey, if you are selected, is expected to take approximately 40 minutes of your time. The survey is encrypted to meet HIPAA compliance and particpants will not be contacted afterwards unless it is to confirm your mailing address to send your payment. 

If you are interested, please email MelanomaStudy@IntegratedResearchandData.com and you will be contacted to pick a time that is convenient for you to go through the 5 pre-screen questions. 

I hope everyone has a nice weekend!

Sincerely,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/18/2014 - 9:16pm
Replies by: DZnDef, BrianP

I'm wondering if anyone has ever tried any alternative treatments(ie, natural/nutrition)? I've been reading about Dr. Gonzalez in NYC.  There are 3 melanoma case studies on his website.  Very interesting.  

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Anonymous's picture
Anonymous
Replies 0

For east coast there's now some listing.  On MIF's melanomaforum.org

 

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mark1101's picture
Replies 12
Last reply 4/19/2014 - 11:22am
Replies by: Bubbles, hdevlin, JoshF, BrianP, kylez, Anonymous, mark1101

Aynone who has already gone through Il-2 able to tell me what the treatment was like and how side effects impacted them?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/18/2014 - 11:08am
Replies by: kpcollins31, melissa ann, Anonymous

My husband had a melanoma mole removed over ten years ago before we even met,  and was fine ever since.  Last year he noticed a lump under his arm, had a ultrasound done and was told it looked benign. Now 7 months later, at the insistance of his dermatologist, he had it looked at again and asked for a biopsy.  They just told him today it is melanoma.  I am in shock.  we don't even know what stage yet, but since it was something he could feel and has been around since last year, that makes us feel worse about prognosis.  It would help if I heard from others who had been through somthing similar and had a positive outcome?  So sad today.

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secondhalf's picture
Replies 1
Last reply 4/18/2014 - 5:41pm
Replies by: SoCalDave

We are  in the early stages of planning Round 2 with Metastatic Melanoma Stage 3.  One option for treating the is isolated limb perfusion chemotherapy at Georgetown.  We turn to those of you that have blazed this trail - what are you thoughts on this treatment?  

We are still waiting to see if this tumor is BRAF negative like the first one that was found in the axilla.  The 'new' tumor is in that same side and it grew quickly.

We also have our Johns. Hopkins visit scheduled.

Thanks in advance!

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Marianne quinn's picture
Replies 5
Last reply 4/17/2014 - 11:18pm

My husband was in the 10 mg. Ipi arm of the ipe vs. interferon trial. He did very well with the induction phase- being careful with his diet and a rash that is pretty easily controlled with Benadryl and lotion. He was 3C.

2 weeks after the induction phase, a CAT scan was done, then a PET.. It showed a 2 cm. nodule in the liver by his diaphgram.  We were devastated. A biopsy was done ( with difficulty) and it was positive.

Stereostatic radiation or ablation was offered. A very confusing story, but  another CAT scan for placement for stereosstatic radiation was done  2 weeks  later. and all the radiologist said was "very small, a blush. We elected to go with ablation for a variety of reasons. We are wanting another CAT scan before surgery as the radiation oncologist could not give us a dimension on the lesion. I don't know why as the lesion on the CAT scan and the biopsy done with CAT scan was very easily seen. This is upsetting.

My question is - has this happened to anyone? The oncologist says the ipi is obviously not working due to him being NED prior to entering the study .( December 31, 2013) I am not sure that is correct. We are seeomg  a general oncologist who we like very much but who admits she has little experience with ipi. I know that ipi can have a delayed reaction and can make a scan look horrible at first. The main concern seems ti be that he was NED prior to the study. He has been removed from the study.

If this lesion has disappeared, he wants to get back in the study. Is that possible?

Has anyone out there had good results with ablation?

Has anyone gone from NED to Stage 4 while on ipi? What happened to you?

I was so worried about the 10 mg ipi side effects etc. It never crossed my mind that a lesion would show up right after he reached therapeutic levels . This sucks.

Any info will be greatly appreciated. We will probably ask for a consult with a melanoma specialist after the surgery. We would have asked for one earlier, but things were going so well there did not seem to be a need.

Thanks.

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The Independent ,

CHARLIE COOPER HEALTH REPORTER,

17 April 2014,
737 words,
English,
IND,
1,11,
© 2014. Independent Print Ltd. All Rights Reserved.

News | * Trials of revolutionary personalised drug treatments to begin this summer * Genetics-based approach will 'rewrite the rulebook', says head of Cancer Research UK ‘These treatment trials will rewrite the rulebook’

A "revolutionary" drugs super-trial aimed at discovering personalised treatments for the UK's biggest cancer killer is to get under way this summer, opening what experts have called a "new era" in the fight against the disease. Scientists will exploit a new understanding of the genetic properties of cancer tumours to help them identify drugs to be "targeted" at patients with specific variants of lung cancer, in an unprecedented partnership between researchers, the NHS and the pharmaceutical industry.

Scientists at Cancer Research UK, who have spearheaded the "genetic revolution" in cancer treatment, will be given access to the drugs libraries of the pharmaceutical giants AstraZeneca and Pfizer from July this year.

The trials, which will seek new treatments for patients at advanced stages of incurable lung cancer, are among the first of their kind in the world. Initially, they will test the effectiveness of 14 drugs against 21 genetic abnormalities identified in the tumours of several hundred people.

However, it is hoped that drugs which work against the different genetic varieties of every type of cancer may one day be discovered in this way. Professor Peter Johnson, chief clinician at Cancer Research UK, said the trials marked the beginning of "a very exciting time" in the fight against cancer. "We've been talking for a long while now about how the genetic revolution was going to impact cancer care and we’re really starting to bring these things together now.”

Over the past decade, new technologies have allowed scientists for the first time to perform detailed genetic analyses of cancer tumours, revealing the molecular changes that take place when healthy cells turn into cancer cells.

Scientists have identified a wide range of abnormalities, and cancers previously thought of as one condition have now been revealed to have particular genetic variants in different patients – opening up the potential for more targeted drug treatments, known as stratified medicines.

In the trials, small groups of patients will be identified who are likely to benefit from a certain drug. Up to 12 molecules developed by AstraZeneca will be included and two from Pfizer, but it is hoped that other pharmaceutical companies will open up their drugs libraries to cancer trials in the coming years.

Dr Harpal Kumar, Cancer Research UK’s chief executive, said the trials would “re-write the rulebook”.

“We’re talking about giving a number of options to patients who otherwise would have exhausted their treatment options,” he said. “[This] shifts the emphasis of designing a trial around a single drug to designing a trial that selects from a range of drugs, for a specific patient.”

Lung cancer is the biggest cancer killer in the UK for men and the second-biggest for women. There are 42,000 diagnoses and 35,000 deaths from the disease every year. Globally it kills 1.6 million people a year and while rates are declining in men, women have become more susceptible because of changes in patterns of smoking. Dr Kumar said survival rates for the disease had remained low, making it a good candidate for these first clinical applications of scientists’ new genetic understanding of cancer.

Menelas Pangalos, executive vice-president of innovative medicines and early development at AstraZeneca, said it was “not beyond the realms of possibility” that targeted cancer drugs could, within a decade, dramatically lengthen survival times for patients with certain types of tumour.

“One of the challenges we have is how to get these targeted molecules to the right patients in a cost-effective and time-effective way … [Over the next decade] we could start to offer patients a sequence of therapies that could prolong their life and make this more of a chronic illness, rather than an illness that is fatal within months,” he said.

Professor Johnson said analysing the “molecular landscape” of cancer patients’ tumours from the moment of diagnosis could become the norm, allowing doctors to prescribe treatments aimed at the specific genetic characteristics of their cancers.

Patients from 18 Cancer Research UK centres, attached to NHS hospitals, will take part in the initial trial, which has been hailed as “ground-breaking by the Health Secretary, Jeremy Hunt.

Independent Print Ltd.

 

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Thankful for this site. It was the first thing I came across when Googling. The positive stories and photos are making me feel ok.

I have just left the GP's office for my test results and am so confused. A mole I had removed under doctor's orders has come back malignant, and now I have to wait to see if it has spread.

I am quite shocked, and trying to keep a happy face for my children. Husband is at work.

She said I would be contacted within two weeks for an MRI and further testing.

If I post the microscopic description, I hope there is someone who will be able to give me some further info, good or bad. I work in the arts - have always failed science and it all makes no sense to me - apart from the word malignant. I know that's not good.

Also, how does everyone know what stage they are? I wasn't told. How can I find out?

Ok, here is the microscopic description:

Sections reveal a melanocytic lesion which has an assymetrical architecture and in areas a poorly circumscribed peripheral margin. A lentiginous growth pattern predominates with epithelioid melanocytes and focally there is early confluence of the junctional lentiginous melanocytic proliferation. Isolated foci of pagetoid change are seen and there are a few nests of melanocytes at the dermoepidural junction. In a perifollicular region there is mild fibrosis and pigmentary incontinence. A benign melanocytic naevus is seen on the deeper sections and this is clear of the margins. Focally there is fibrosis and chronic inflammation, consitent with regression.

Conclusion: Left clavicular area. Malignant melanoma in situ extends to .7mm from the closest peripheral margin.

 

Does that make sense to anyone??

If it's bad just tell me. Honestly I would prefer to know. At the moment I have to wait for up to two weeks to hear from someone who will be able to book an appointment for me. Ugh. Torturous right? And it's Good Friday tomorrow, so no chance of hearing anything soon I would imagine.

The thing that is freaking me out, is I have been feeling awful for about two years. The GPs kept putting it down to my vegetarianism, despite my iron levels being fine. Or a virus. Is this why?

I will stop rambling now. Sorry. I just walked in from the GP, put the television on to keep youngest child occupied and proceeded to Google. I'm not usually quite so verbose. Thank you if you got this far. I think I'm just shocked.

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/16/2014 - 8:00pm
Replies by: Anonymous

I have been hearing bout how anti pd1 drug is meant to be so good for patients on terms of long term survival but is there anyone that is 5 to 10 years out?

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Replies by: Anonymous, Gene_S, Kim K
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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